nevergiveup

Yes he does treat PANDAS with antivirals. Its neuroimmune science Hes on the internet. One interesting thing is someone recently posted a concern over ivig ( on this forum)and retro viruses and they linked up a study about autism and chronic fatigue syndrome and a virus that is in T and B cells??? Anyway, Dr. Goldberg started his quest years ago because his wife got chronic fatigue syndrome. Anyway I found it very interesting that Goldberg has a thirty percent success rate with antivirals and autism. It actually does seem to correlate with the study where 40 percent of the kids with autism tested had this varient T/B cell virus. (This study is brand new and Goldbergs success rate is years old) In addition the study said that this may explain vaccines exaserbating symptoms because they actually increase the immune response therfore increasing the virus in the immune system. One more strange thing, IVIG seems to not helps tics as much as PEX. At least according to Swedo small study. PEX removes all the immune cells. My daughter recently got the flu and I hestitated to use TAMIFLU however with her PIDD I felt I had no option. TAMIFLU causes anxiety and kids with neuropsych are warned against its side effects. My daughter has had severe constant tics after a horrible attack in May. After I gave her TAMIFLU her tics stopped completely. She does not have autism. Also that indian herb clerodendrum is an antiviral and it stopped chronic tics in a long time sufferer. If you do contact Dr. Goldberg I would be very interested to know if he can test for this new immune cell retro viruses that hides out in B and T cells. Thanks Let I don't remember which city, but I think he's near LA. Dr. Goldberg is famous for treating autism with antiviral meds. He believes that autism is caused by Herpes 6 infection, so he uses long duration Valtrex. Many kids have improved or recovered from this therapy. I think he has labeled it NIDS (don't recall what that stands for, but you can probably google it.) I've never heard of him doing anything with PANDAS, but it's possible. Paula

What tests were run, just normal IGG and subclass or did they did deeper? ANA, C3 and C4. T and B cells, vit D levels, any lupus markers? What was the myco plasm pneumonia titer level? Hey your kind of lucky to get that? I couldn't get anybody to run that. Without chronic infect and just a pnuemoccoal titers failure and NO other immune markers it will be hard to justify treatment without vaccinating and proving your sons CANNOT produce these antibodies. Retest though especially if you see your child getting more URI's than in the past. My daughter through years of chronic infection when she was 7 and 8 had normal IGG's, however by the time she was nine they dropped low and stayed low. Even after IVIG they dropped off again, pretty much validating in everyones mind she has an immune deficiency. From what I have been told, kids that fail the titers tests with normal immune systems normally will pass after revaccination. Hence your selective immune def is cured. By the way, These tests (above) are SUPER expensive, they run my insurance after discount close to two thousand dollars each time. I don't think this should defer doing the test I just wanted to warn anyone who has a deductible or anyone who has used up their deductible this year and may want to run markers now so as not to pay out when new deductible rolls over in Jan So as for stats I don't have any I can just comment on what my father has told me and my uncle whom are both going on a 30 years practicing immunology. (Thats 60 years total) Almost all kids who fail this test respond after vaccination therefore they do not have selective immune def. My father said it usually is pretty obvious those that won't respond to revaccination they are pretty sickly and there IGG's tend to be in the 300's. If my daughter had taken the vaccine my father felt she would have responded. However. She has PIDD and maybe selective antibody def but it wasn't a requirement for me to get treatment. I would not give up though, see the immune doc run more tests, no one will make you vaccinate. You can make that call later. Also get the EMLA patch cream it is now generic and only 15 dollars and with kids who constantly get blood drawn this is such a relief for the kids. Obviously something is wrong with these kids immune systems and BBB, everyone will tell you that behind closed doors, however that doesn't mean they know what to do about it or how to treat. Ley us know what happens. . Althoughcmom' date='Oct 19 2009, 08:38 AM' post='41558'] nevergiveup- do you know what if any statistics there are about "normal healthy" kids failing the pneumococcal titers? I am under the impression the docs just don't know, and from that study regarding tylenol and vacs it seems like it could be high. Here is why I ask: dd has always been healthy, no ear infections, few colds, very few antibiotics until pandas hit this year. I had all of her immune numbers done- they are all perfect. The lab did not do the pneumococcal titers (they changed it to a test for mycoplasme pneumonia for some frustrating reason). I plan to have her tested at some point, but, would failing pneumococcal titers with no history of illness (other than pandas) mean anything? (I absolutely won't vaccinate!) Any thoughts?

Mama2Alex Since your doc has treated 12 Pandas kids what does he say about outcomes? If you can get him to call Dr. Bouboulis (Dennis) and consult it looks like both are treating. Your decision to vaccinate has to do with pnuemonia. And honestly after 6 pnuemonias I am appauled at our medical system that something wasn't done sooner. I am not trying to tell YOU what to do just informing all those on this forum whom come on and make stmts like "my son failed 10 out of the 14 titers " Your poll on this forum is not justification that this vaccine is safe. Nor is the fact that after several days your child is fine mean that this vaccine does not create a high antibody response for Pandas kids. I know you weren't saying that but others seeing immunologist may feel that the vaccine is the way to go. And it still maybe the way to go for some but I need to get the word out that Most immun docs when they see a child fail the titer test will IMMEDIATELY recommend this vaccine EVEN with low IGG's and subclasses. It is not required for IVIG in these cases if your child has a history of chronic infection. There are two ways to measure the immune system Quantity ( number of IGG's ). And Quality (does your child create a PROPER immune response and memory of bacteria and viruses). Many and most docs do not feel quantity is important rather quality. Just because your child fails the pnemoccocal titers DOES NOT MEAN ANYTHING. It only means MAYBE he hasn't got a good immune memory. LOTS of kids fail this test the first time. So a vaccination is done to test to see if titers go up. The child's titers is tested and if still low many docs recommend ANOTHER vaccine. In my fathers lifetime career he has rarely seen the titers stay low after the vaccine. This selective antibody def is rare. And parents need to understand this and the potential risks. Not everyone is getting an IVIG after this vaccine. Also you may want to check on this vaccine specifically because IVIG can render vaccines useless if given within 4 months. (Kind of makes you wonder though, did they give the vaccine to test since IVIG will inhibit its effectiveness anyway) Therefore your son may not be protected from strep pnue after IVIG again. Obviously if he doesn't mount a response ( titers failed after vaccine) this doesn't matter then because you will be receiving monthly IVIG's anyway. ( If he does mount a response will IVIG then ruin it? Ask your doc?). Again, your personal medical history is very complicated and worth discussing on this forum just to get the word out for those looking at immune docs. I am not sure how many mothers after looking at your poll and your statement of how well he is doing after vaccine truly understood the implications of all of this. The confusion arises because your son has a history of chronic infection and your decision to vaccinate was based off of that. Many on this forum are recommended to vaccinate TO TEST the childs immune system. Just because your child fails the titers test DOES NOT mean they will get strp pnuemonia. Many immune docs feel as long as ONE titer(out of 14) is above 2 then the child is most likely able to mount a response against pneumonia . This titers test has a long range of sensitivity. I did not respond to your original poll first because your son may need the vaccine and he has a life threatening situation with his respiratory illnesses. ( Early Oct ). This was your own personal choice. (However monthly IVIG's would be my choice) This truly is separate from PANDAS and I did not want to scare you or get involved with your medical decision. However your sons medical HISTORY is what is most concerning, not his pnemoccocal titers test. Parents need to understand the difference. Many kids do not pass the titer test first time and most kids after revaccination mount an immune response. Without a LONG and dangerous history of chronic infection,most immun docs will not use this test as an indicator of an immune problem. The vaccine has hurt Pandas kids and parents need to understand that the vaccine is given ROUTINELY to test for an immune response not always to prevent pneumonia. (*Although it does do both in many cases). You may have understood this but I wanted to make sure others did too. Its complicated but in our current medical system doctors have 15 minutes per patient and are quick to recommend standard procedures. My daughter went in for her immune testing, and after her doctor got back her results, the nurse phoned me and said that I should have her Vaccinated and retested. The doctor will see you again after the vaccination and new blood draw. No conversation or anything. After I called and said no vaccines, my immun said ok well its not necessary anyway she can have IVIG with low IGG's. It was that simple, also that frightening. Had I just obeyed orders who know where we would be now. I will be thinking of you as you go through all of this. I know your son will do well. Many feel the kids with selective antibody defs have OCD and chorea not as a disease but rather are more symptoms of this immune disorder. There is one study in Immunology showing a case with complete remission of OCD and chorea after several IVIG's. Take care. If you want more info on the vaccine have your doc consult with Dennis Bouboulis.

Shaes mom , The pnuemovax is to test to see if a titers response is achieved. It is a test to qualify a polysacchoroid immune def. Your doctors are just following stand protocol for diagnosis. Nothing special. I will not change my stance, if we are here to protect the kids then the facts need to be stated. This vaccine could cause some kids to relapse. PERIOD. It has happened in the past. This is how the doctors check to see if the child creates a proper immune response. If the vaccine is given and the child produces titers then they do not have the deficiency. PERIOD. I am insulted by your response, you really want PANDAS kids running out to get this vaccine to try and justify IVIG? With lower IGG's this TEST is not necessary. Parents need to know this. This forum is not worth our time if we cannot honestly talk on here without insults. This vaccine is given to test the kids immune system. If they respond to the vaccine they are NOT immunodeficient. If there are alternatives PARENTS should know. I am sure you think these immune docs are doing something special since you personally referred them, but sorry this is only Immune Doc 101, nothing out of the box. And somewhat risky I might add considering Newer docs don't require this. Don't forget the doc also said insurance won't cover this if they don't vaccinate first. So was this a DOC decision or insurance. This doc already knew the child would fail the test, but for insurance he put the kid at risk. I disagree with this protocol. quote name='ShaesMom' date='Oct 18 2009, 01:32 PM' post='41477'] Nevergiveup-I'm not really sure your statement "immunologists vaccinate with the pneumococcal vaccine to diagnose secondary immune deficiency" is correct. Maybe that is how your Father dx's SID but not all Immunolgists do this. It is often standard practice among Immuno's to revax with Pneumovax prior to giving a dx of Selective Antibody Deficiency and even CVID. If you don't believe me I'll be happy to give you the phone number of my Immuno who is recognized as a leader in the industry by IDF and a professor at UCLA who consulted on Mama2Alex's son case. I can also direct you to a forum for CVID patient's who will also tell you that it is common to be revaxed and it has nothing to do with secondary immune deficiency. I must say your post appears to have a lot of assumptions regarding how much research and knowledge both Mama2Alex and her doctor's have. I know her family has agonized over this decision and has not taken it lightly in any regard. I believe in the case of her son they are not only dealing with Pandas but also a child who has repeatedly had Pneumonia and been hosiptalized. I believe they are doing what is in his best interest to not only treat his Pandas but his overall health issues and prevent future illness. I would hope that your Immunologist would have SOME idea what is going on in your child's immune system since this is her speciality. I think it is important that we ALWAYS support each other and never offer such judgement for another's decisions. Definition from Immune Deficiency Foundation's publication: When the damage is caused by an extrinsic force, such as an environmental factor or agent, it is called a secondary immune deficiency disease. For example, AIDS is a secondary immune deficiency disease caused by the HIV virus. Secondary immune deficiencies can also be caused by irradiation, chemotherapy, malnutrition, and burns. http://www.primaryimmune.org/publications/...pats/e_ch01.pdf

PLEASE be aware that immunologists vaccinate with the pnemococal vaccine to diagnose secondary immune deficiency. Most kids who receive the vaccine do create a response and therefore DO NOT get IVIG. Its the insurance co requirement to eliminate costs. My father is an immunologist and rarely has ever seen a child after two vaccines not produce titer response. ( Then YOU cannot have IVIG ). It is standard protocol. They would recommend this without even considering or examining your child. In other word step A step B , it doesn't take a medical degree to follow insurance companies steps. The immunologists need to dig further for the PANDAS kids. Dr. Bouboulis treats kids from Leckman with PANDAS and has seen adverse PANDAS reactions from this vaccine. Immunologists who are not familiar with PANDAS should not be making statements like " I doubt it will hurt them". This is careless. If they don't believe in PANDAS how can they know whether it will hurt them. Antibody responses take two to three weeks to accumulate after a vaccine. Thats why the flu shot is not effective right away. So an adverse respone could take months for the antibodies to accumulate. Look at Sydehams Chorea it can take up to six months after strep for the autoimmune response to accumulate enough antibodies to cause the attack. I strongly recommend having your immunologist consult with the experts like bouboulis and Elizabeth's immun doc in Boulder. My father not knowing any better thought of giving this to my daughter and now he knows not to. My immunologist said it was not necessary to get IVIG. Primary immune def. IVIG is covered with chronic pnemonia and low IGGs, ITS COVERED by all major health insurance. My father didn't even know this because he had been following the same protocol for so long he never checked into it. I am glad your son is fine, but the stats for PANDAS have SHOWN adverse reactions and I DO NOT think it should be recommended to anyone on this forum. HOW many PANDAS kids has your immun doc treated??????? Mine has never treated a PANDAS kids and is careful not to assume she knows what is going on with her immune system. I will say it again. PANDAS EXPERTS need to be consulted BEFORE this vaccine should be considered. It has caused adverse reactions! It is not required to get IVIG, it is though one way to get insurance NOT to cover IVIG, especially if after the vaccine your kid gets the titers. AND as my father stated it is extremely RARE to fail the titers test after the vaccine is administered. 'mama2alex' date='Oct 18 2009, 09:41 AM' post='41452'] Wanted to update anyone who's interested, as we have changed course since I last posted on this. On Thursday (64 hours ago to be exact!) we gave our son the Pneumovax. So far, he is doing fine - no reaction whatsoever that we can see. Before doing this I talked to one of the immunologists from UCLA to see if I could convince him to diagnose without the vaccine. He said his gut feeling is that Alex has Selective Antibody Deficiency, but that they couldn't make the diagnosis without definitive "biologic markers" (titers in response to the vaccine). It seems like they are under a lot of pressure from the insurance companies to be conservative in prescribing IVIG and not to diagnose based on "gut feelings." For us, it came down to whether we could risk a 7th bout with pneumonia this winter, especially with H1N1 out there. We just couldn't. I think I've posted before that he's had pneumonia 6 times and has been hospitalized twice (with one ambulance ride). This way, if he mounts a response to the Pneumovax, he'll be protected from 23 types of pneumonia-causing bacteria. In that case, we will go straight to Dr. K for IVIG for the PANDAS. If he doesn't, I'm fairly sure the immunologists will prescribe monthly IVIG. Both choices (vaccinate/don't vaccinate) were risky for us. We're praying we made the right decision. I wanted to post about this because I know there are several of you struggling with this decision. I am not advocating getting the shot, in fact in Jan. '08 Stanford wanted us to get this vaccine to test his titers and we opted not to. I think it's an extremely difficult and personal decision, and just wanted to share what's happening with us. Thanks to everyone who responded previously to help me think this through. Susan - How did your immunology appointment go? DCMom - No, this was not a live vaccine and was not preserved with thimerisol.

Dr Latimer has treated 18 year olds and college kids. Mostly with PEX. I am so sorry for your daughter and your family. One more thing, antivirals may also be an option. I have heard of Herpers encephalitis causing autism in teens and adults. Dr. Goldberg in California has been treating his patience for years on antivirals, for both chronic fatigue syndrome and late stage autism. Apparently recently there was a new discovery stating that a retrovirus in B and T cells could be the cause of autism. I would try PEX and then antivirals and antibiotic treatment as a followup.

I am not sure what happened that day you were in but I can assure you that it had nothing to do with your child being a PANDAS kid. Andrea and Faith are some of the kindest office staff I have encountered in doctors offices. And unfortunately I can speak with LOTS of experience in doctors offices. I will not speak about anything personal, but if you were in this week I can tell you that you misread the situation. Good luck with the immunologist. Do not let them give the pnemoccocal vaccine to test titers. Do you have an immunologist, if not ask parents on forum, some immun docs are more familiar with Pandas than others

Hooray, I was thinking about you this week. Glad it went well. Any headaches or fever or fatigue with the lower dose? My daughter got sick this week may be swine flu. Tamiflu worked well. I hope next week she gets her first PIDD IVIG.

My daughter just came down with the flu. Approx. 20 hours ago she started sneezing and was congested. Woke up congested and had fever and aches and pains by noon today. We just came back from testing for H1N1. We do not have results yet. Pediatrician prescribed tamiflu. Wants me to start now because my daughter has low IGG's, and other immune defiency concerns. HAs anyone given their children Tamiflu? Did it help or add neurological side effects. I know one person posted this summer it made her daughter HAVE A BAD pandas RELAPSE. I only have several more hours to make my decision. Please let me know if you have tried Tamiflu and if there were any PANDAS side effects. Thank you

My vet knew that in rare occasions a child could give a dog the human version of strep. Although she says it is rare some dogs have tested positive for this strain. We opted not to test but treat. She researched the subject and decided on 2O days of the dog equivalent of Augmentin??? The drug was called Clavanox if my memory serves me correctly. I did not know about the cats though. Anyone know if cats carry the human strain.

Hi mommd, My father is an immunologist refers all his polysacchroid antibody def cases to hopkins if they do not respond to vaccine. (For ivig) After my daughter came back with several years of failed immune markers. (See my earlier response above). He insisted to me to take the vaccine and see if my daughter responds. Even called my daughters imm doctor here in my home town to review her care. I was hesitent after hearing about relapse from one of Swedos PEX kids. I went in to see my immunologist explaining I didn't care what my dad thought, that I felt it could make my daughter sick if I vacinnated. (Mentioned high ANA and Swedo case). My immunologist said no problem, she was ok with that and with a low IGG and chronic sinusitis we should have no problem getting insurance coverage. I checked the PIDD association and it appears to be true. My immunologist felt insisting on the pnuemoccocal vaccine was a little old fashion and not necessarily required. Most parents do it to avoid IVIG, my father said very rarely after 2 vaccines do the kids not respond and do not show titers. So is your goal to have ivig fix his titer response, or his overall immune def? If you vaccinate you run the risk of only vaccinating and no ivig coverage. Is this the only way to prove he has an immune def. I think immune docs are no different than Neurologists or OBGY for that matter. "Its not if you see a doctor, its WHICH doctor you see that matters". My family likes to say that. (Of course they are mostly mds ). My daughter just got the go ahead from her doc for monthly ivig for 6 months. They see in children after 6 months the immunesystem does sometimes alter and life long ivig are not always necessary. My father is all for my daughters ivigs for 6 months. Apparently , I have heard Leckman from Yale refers some of his kids to an immunologist. I am trying to get this immunologists name to have my father call him to see what kind of results They are seeing from monthly ivig's. I heard that they are seeing some commonalities among these kids immune markers Like low IGG4's. Again this is just doctor and chat room hearsay and still trying to get details and facts about the yale immunologist seeing panda kids. My understanding from what I've read here is that all these kids have disregulated immune systems (not sure that is the right term). All are having autoimmune reactions, possibly to more than just strep A, many have allergies (which is an over-response), and now its starting to look like some or many have immune deficiencies (under-reacting). In our case, I think it's all three. He's had allergies for a long time, 6 pneumonias and a number of other infections, failed many of the Prevnar titers, and now PANDAS. For kids like mine who've been ill repeatedly with things like pneumonia, it's important to understand it and treat it, so they don't end up in the hospital repeatedly, have bad scarring of the lungs, or worse. Also, I'm beginning to wonder if the kids with immune deficiencies need more than one IVIG not only for the deficiency, but for the PANDAS. This is just speculation on my part. That said, we were recently told my a team of immunologists at UCLA that to be diagnosed with an immune deficiency and receive IVIG (probably monthly) we'd need to give him the Pneumovax. (One of them told me privately that his gut instict is that my son does have a Specific Antibody Deficiency to Strep Pneumoniae, but would not diagnose on history and existing labs.) We agonized over this decision for more than a week. I talked to everyone I could. Two moms said their PANDAS kids had the vaccine and did fine. One said her daughter received it after a full recovery with PEX and she had a relapse of PANDAS that was worse than the initial onset. They treated with PEX again and it didn't help her. She suffered for two more years before recovering when her period started. In the end, we decided not to mess with the vaccine and are doing IVIG with Dr. K on the 22nd/23rd. In the meantime, or perhaps after we do the initial IVIG, I'm going to try to find someone who will give me a diagnosis without the vaccine, but I think they are under pressure from the insurance companies to do the vaccine to "make sure." It is likely to be a long process for us to work through all this. The vaccine decision is an extremely difficult one, but I think there's no right answer for everyone. You have to use your own intuition about your child.

Hi mommd, My father is an immunologist refers all his polysacchroid antibody def cases to hopkins if they do not respond to vaccine. (For ivig) After my daughter came back with several years of failed immune markers. (See my earlier response above). He insisted to me to take the vaccine and see if my daughter responds. Even called my daughters imm doctor here in my home town to review her care. I was hesitent after hearing about relapse from one of Swedos PEX kids. I went in to see my immunologist explaining I didn't care what my dad thought, that I felt it could make my daughter sick if I vacinnated. (Mentioned high ANA and Swedo case). My immunologist said no problem, she was ok with that and with a low IGG and chronic sinusitis we should have no problem getting insurance coverage. I checked the PIDD association and it appears to be true. My immunologist felt insisting on the pnuemoccocal vaccine was a little old fashion and not necessarily required. Most parents do it to avoid IVIG, my father said very rarely after 2 vaccines do the kids not respond and do not show titers. So is your goal to have ivig fix his titer response, or his overall immune def? If you vaccinate you run the risk of only vaccinating and no ivig coverage. Is this the only way to prove he has an immune def. I think immune docs are no different than Neurologists or OBGY for that matter. "Its not if you see a doctor, its WHICH doctor you see that matters". My family likes to say that. (Of course they are mostly mds ). My daughter just got the go ahead from her doc for monthly ivig for 6 months. They see in children after 6 months the immunesystem does sometimes alter and life long ivig are not always necessary. My father is all for my daughters ivigs for 6 months. Apparently , I have heard Leckman from Yale refers some of his kids to an immunologist. I am trying to get this immunologists name to have my father call him to see what kind of results They are seeing from monthly ivig's. I heard that they are seeing some commonalities among these kids immune markers Like low IGG4's. Again this is just doctor and chat room hearsay and still trying to get details and facts about the yale immunologist seeing panda kids. My understanding from what I've read here is that all these kids have disregulated immune systems (not sure that is the right term). All are having autoimmune reactions, possibly to more than just strep A, many have allergies (which is an over-response), and now its starting to look like some or many have immune deficiencies (under-reacting). In our case, I think it's all three. He's had allergies for a long time, 6 pneumonias and a number of other infections, failed many of the Prevnar titers, and now PANDAS. For kids like mine who've been ill repeatedly with things like pneumonia, it's important to understand it and treat it, so they don't end up in the hospital repeatedly, have bad scarring of the lungs, or worse. Also, I'm beginning to wonder if the kids with immune deficiencies need more than one IVIG not only for the deficiency, but for the PANDAS. This is just speculation on my part. That said, we were recently told my a team of immunologists at UCLA that to be diagnosed with an immune deficiency and receive IVIG (probably monthly) we'd need to give him the Pneumovax. (One of them told me privately that his gut instict is that my son does have a Specific Antibody Deficiency to Strep Pneumoniae, but would not diagnose on history and existing labs.) We agonized over this decision for more than a week. I talked to everyone I could. Two moms said their PANDAS kids had the vaccine and did fine. One said her daughter received it after a full recovery with PEX and she had a relapse of PANDAS that was worse than the initial onset. They treated with PEX again and it didn't help her. She suffered for two more years before recovering when her period started. In the end, we decided not to mess with the vaccine and are doing IVIG with Dr. K on the 22nd/23rd. In the meantime, or perhaps after we do the initial IVIG, I'm going to try to find someone who will give me a diagnosis without the vaccine, but I think they are under pressure from the insurance companies to do the vaccine to "make sure." It is likely to be a long process for us to work through all this. The vaccine decision is an extremely difficult one, but I think there's no right answer for everyone. You have to use your own intuition about your child.

Thanks Buster. IVIG definately lowers ANA my daughters was reduced from 1:2650 to 1:80. Alex, I can't remember did your child have IVIG and then PEX?? Sorry about the tooth infection. Have you run another Cunningham test? My kids Cam Kinase has raised from 144 to 162 over the past 2 months. She had IVIG mid may. Two months post IVIG her Cam was 144 now its raising. She has had no infections or viruses. However her immune markers recently dropped off again and now she has PIDD. Sorry about that. I put too many things in the explanation :-(. I revised the post, see if it makes more sense now . I'll post material on Treg separately. Regards, Buster

Hi mommd, Several things did you get IGG panel, subclasses, ANA and complements. My daughter doesn't need prevar vaccine because insurance will cover IVIG with low IGG and subclasses plus a history of chronic infections. Also I am wanting to give my daughter the swine flu vaccine, since this flu is prevalent and spreading quickly. My uncle also an md suggested to run Cunninghams test pre vaccine and three weeks post to monitor Cam Kinase and see if vaccine is raising antibodies. If so gives you future info on whether or not vaccines can flair PANDAS. May help others decide whether to vacinate also. Also did you ever get another cam kinase post pex? Very interested to see what it was?

Thanks for all the info to all. I understand that LLM has had some regression after PEX and I also recognize healing can take awhile. Many have a saw tooth recovery. I however am trying to understand why Dr. K expects a turning back of the pages, and says it is a reduction in inflammation and Dr. L says there is immediate improvment with PEX and does not MOST of the time see a turning back of the pages. I recognize some kids heal faster then others. I am however looking for answers as to why Dr. K actually sees regression and warns parents of this while PEX normally does not. Just more to think about. Could adding more antibodies provoke symptoms before healing happens?? And if so why? Buster, you lost me on this explanation??? Usually I can partially follow your science.

Yes in IVIG they are undifferentiated, however they are from adult donors who tend not to get GABHs anymore and shouldn't have antibodies or at least a lot of antibodies against strep. But many have seen symptoms increase after IVIG and some have turning back of the pages up to 12 weeks. If it is decreased inflammation as Dr. K says why wouldn't this also be the case for PEX. Once the antibodies are removed the child still has inflammation. In theory, Cunningham is looking at 4 different antibodies and symptom correlation. Could IVIG be putting some of these back in and if the child at the moment has a weak BBB couldn't this be the symptom exaserbation? te='Oct 10 2009, 12:34 PM' post='40633'] I think with Mady Hornig's mouse model, they gave the BBB weakened mice antibodies from mice who had produced an immune response to GABHS (antibodies to GABHS). This was how she demonstrated that the reaction was due to the antibodies and not the GABHS...The PANDAS mice didn't have GABHS, only the antibodies. Susan Swedo said at one of her DAN conference lectures, that she thinks the difference is that PEX gets quicker results because it actually filters out, removes the offending antibodies, so sx's cease. With IVIG, she thinks the donor IgG recognizes the offending antibodies as foreign and destroys them...so it takes time for that to happen. But, your question makes me wonder about the nature of the IgGs in the IVIG...are they undifferentiated for antigens?

She is so young. At three years old what kind of symptoms does she have? Get the Cam Kinase and if she is very high go take them out. I would then monitor her immune markers for any immune deficiency and maybe consider IVIG at lower doses to fix her immune system if necessary which may prevent relapses. If her cam kinase is low, maybe wait it out, my daughter also had trouble 40 days post. It resolved within 3 weeks. And she did pretty well then 4 month post. However now she is having some intrusive thoughts and her Cam Kinase is going up again. Anyway just an opinion from a mom, not a doctor. Get her blood work in to Kathy Alvarez ASAP she is running another group on Wednesday, if you mail in Monday you may make the cut. Otherwise it may take a couple more weeks. quote name='FallingApart' date='Oct 10 2009, 12:15 PM' post='40629'] Hi there, My DD is 3 years old. The IVIG was a miracle for us. Both IVIGs were 2 day doses and each time DD showed signs of improvement after the end of the first dose - so only half way through. She definitely does great on OVIG, it just seems her effects don't last. We haven't yet gotten her CamKinase numbers because we ran out of blood. We didn't know about the test the first time and then ran out of blood the second time. We will certainly get it this time!!!

Falling apart I cannot remember how old your daughter is? Or what her Cam Kinase is? My daughter also had IVIG and hasn't actually relapsed but her Cam Kinase is increasing again post 5 months IVIG. My daughter says IVIG really helped her and she wants another and we are currently trying to figure out what to do also. Although she says IVIG helped her "turning back of the pages " were concerning. Did IVIG produce sysmptom remission for a while???

Looking for knowledgeable answers or ideas on this one. If PEX removes antibodies, and we all know inflammation takes months to resolve, why do kids after PEX see immediate improvement with NO turning of pages or limited amounts? Some after IVIG have immediate symptom resolution, others have a turning back of the pages for an hour or two a day, OTHERS have complete set backs worse than expected for weeks after IVIG. If Cunninham is looking at several different antibodies, and I have been told that they think OCD and tics may be caused by different antibodies could't the IGG's we are downloading into the kids bodiies contain some of these antibodies????? Causing a set back???? The mouse model use mice with weak blood brain barriers and gave them IGG's. Are these the same IGG's in IVIG? If anyone can tell me which antibodies were given to the mice I would like to Know? Dr K says you will see many symptoms you haven't seen in a while come back after IVIG. No one says this after PEX. Thanks for your help.

Pandas is not caused by strep, the study is correct that the number of step infections doesn't correlate with OCD or STREP. It only takes one strep throat to cause the autoimmune reaction. Our kids are genetically predisposed to have an autoimmune reaction. It is just that strep is one of the triggers. Mycoplasma pnuemonia also does the same thing. Gilbert knows a portion of OCD and tics are autoimmune. But how does he distinguish which kids have PANDAS and which have TS or OCD. The specialties are all messed up, if you have OCD your pediatrician sends you to a shrink, if you have bad tics you get to see a neurologist. And if you have chronic infection or chronic strep you get to see an infectious disease doctor. If you have immune problems either a Rhuemotologist or immunologist. All of these specialties need to be involved. We have a long battle ahead of us. Cunninghams lab test will take three to four years for FDA approval. And lets also remember Kurlan is making big bucks heading up the multisite mirapex study on tics. What pharmecuetical is going to pay for a PANDAS study. Gilbert has 15 minutes with each of his kids per appointment. Without a blood marker how does he have time to distinguish one TS child from another. And also as he has stated, He is a neurologist not an immunologist. Its not his specialty. At least we are making some headway, he did say the study was lacking good measurements and he also said that immune markers are needed. He never said the there is no correlation. Seven years ago he didn'T believe in it, 5 years ago he had 5 or 6 kids in his practice he diagnosed with it. Now he wants markers so he could try to treat. He's not our guy though, he is waiting for someone else to find the markers.

Shaesmom, PMom and dcmom, I have to add my two cents to all this great conversation. My father is an immunologist and says as long as you have at least ONE s. Pne titers over 2.0 then your body will respond adequately to s. Pne. But if a child has CHRONIC infection over years and no s.pne titer over two then something is definately wrong with their immune system. And Dr. L doesn't necessarily favor PEX over IVIG. She looks at the kids and their history to determine which precedure will help them best. When the immune system is messed up one part may be overreacting which will make other parts underreact to compensate and vis a versa. Therefore when you look at some immune testing you can't tell what is the cause, an overactive immune system or underactive immune system. (If the child has both, like high ana and low IGG,). One thing is for sure though if a child does not produce titers after multiple exposure to a virus, or bacteria it has an immune memory problem which needs treatment. Some autoimmune conditions like vasculitis receive IVIG or PEX, if one is tried and it doesn't show an immediate result the other is then tried and it usually works. Apparently doctors don't know which will work for which patient. Interesting that Swedo found multiple IVIG was preferred for SC over PEX, yet as a one time treatment PEX seemed to be better for PANDAS kids. Yet according to Dr. C it may be a spectrum disorder with the same antibodies. My daughter had one IVIG and I can say it helped but it was no cure. Why does Boston Children not give IVIG anymore to kids?? They use to back in 2003. I heard they said it didn't work. I know a women Rheum in my city who treated infection triggered OCD with great success with IVIG, when she was given some PANDAS kids with multiple tics and high strep titers I know IVIG didn't produce the the same immediate response. Dr. Trifilleti gave IVIG to help eleviate OCD and pulse steroids for tics. I have contacted Dr. Sultans office and several leading DAN's who say they have multiple patients who still have tics after multiple IVIG's. They told me tics can take years to subside. Yet some people have seen help from IVIG with tics. We know that children can have high antibodies that do not get through the BBB and have no symptoms. You need both a leaky BBB and antibodies to have the PANDAS symptoms. IVIG helps the leaky BBB and PEX gets rid of antibodies. The most profound statements recently written on this forum come from two moms after their children had PEX. They say things like cure. You rarely hear that from IVIG. You hear at about 3 to 4 months post 90percent or 85 percent. We do know one thing for sure, infection and viruses cause the BBB to leak allowing antibodies in to cause brain inflammation, if your child has an immune deficency then multiple IVIG's will help reduce illness, therby allowing the brain healing time in between attacks. Any virus can cause the BBB to leak and the Cam Kinase will stay high for years once triggered. I agree with P. Mom IVIG will help reduce an attack but is not necessarily a cure. PEX seems to help most for a one time treatment. But some have also had relapses on PEX. But EVERYONE who has a child who gets chronic infections should check their immune system. Having chronic illness only worsens the PANDA symptoms, Shaesmom is right for getting the word out. I think we should all use the word "treatment" for IVIG, steroids, PEX and "remission" instead of cure. If we keep saying cure in this forum we may be hurting our cause and potentially deny further treatment to other children. These are words doctors typically use for autoimmune diseases and they produce more realistic expectations.

Yes, my immunologist tested after 6 weeks, in some of the severest immune deficiencies they see the drop off that quick. But they did say that the IVIG can alter the immune system much longer. I think with the high dose she received we should have waited longer and saved ourselves two thousand dollars for the lab work. At the time my daughter was so sick we didn't want to miss a thing. So we were very careful and conservative. Are you also on a six month trial? Although this is not to treat PANDAS, fixing her compromised immune system will help her not get so many repetitive infections thereby lessoning her infection triggered OCD. Hopefully allowing time for her brain to heal. In the end I think this will help, and so does my father whom is not her physician but is an immunologist. He has only refferred a handful of patients to IVIG in his lifetime. He feels it is a very last case alternative. He has always been against her receiving IVIG but with her recent attack of pandas and her immune blood markers he feels this is serious enough to justify a 6 month trial. But again he is not her doctor, he lives thousands of miles away from us.

Thanks for the reply. Your daughter's dose is about half of what my daughter received for PANDAS (calculating body dose per Lb).I know they give lower doses for PIDD. Of course we would prefer this because her side effects from the higher dose were pretty severe. She would barely have recovered before the next IVIG if they give them every four weeks. To answer some of your questions, she has insufficent pnuemoccal titers, low IGG, low IGM, low subclass one, low C4 and an extremely high ANA. However the medical justification is low IGG and chronic infections over several years. A six month trial is the approach. Although her PANDAS is not part of this diagnosis the immunologists feels they may be related and wants to make sure her dose is sufficient. I do not think we will give her the pandas dose, probably more then the PIDD dose. For anyone doing immun testing after IVIG test at 6 weeks post, and then test again about 20 weeks post. The IVIG can alter the true state of the immune system for that long. Thanks again Hi Nevergiveup- My dd just finished her fourth round of IVIG on Thursday. She weighs 41 pounds and gets 10 grams of Gamunex. It was taking about 4 hours but we got it down to 3 this last time. YAH! Are you working with an Immunologist? Other than what Dr. K recommends for the large two day dose I do not believe there is a protocol for treating PANDAS monthly with IVIG. What PID did they dx her with--CVID or Specific Antibody Deficiency? Which by the way, according to some longterm PIDDer's and for insurance purposes is the same disease. Does she have low IGG levels or did she fail the Pneumo titers test or all of the above? Are they planning on doing IVIG monthly for a trail period or indefinitely? I feel that the dose my dd is receiving for her dx of CVID is significant. She only had a few minor vocal tics (which have disappeared) so I'm not really sure I can give you assurance regarding the tics. I can tell you that every month we have seen improvements. After round three we noticed that she finally started eating lunch at school and even began asking me to send more in her lunch box. She also did not complain of leg pain except two days prior to round four. She does not enjoy having the IV done but she has told me on several occasions that having IVIG makes her feel better. She has never complained or thrown a fit when the time has come near. In fact, last week when her legs were bothering her she said "thats okay-they'll stop hurting after I have IVIG." She still has some minor anger issues and emotional labilty in the form of self doubting but we can usually put a stop to these pretty quickly. I'm afraid the anger issues may have become a habit and that we will have to "retrain" her as to what is appropriate. Overall, we are very thankful that she is receiving monthly IVIG and I believe in my heart that we are doing the right thing for her. If you contact the Immune Deficiency Foundation they will send you several publications on PIDD's and the treatments free of charge. They will also connect you with a Peer in your area to help answer questions. You can sign up for a weekly (?) email newsletter. 800-296-4433. You may also want to go to IGLIVING.COM and sign up for there free monthly magazine. It is all about PIDD and IVIG. It is a very good magazine. I don't remember how old your daughter is but you can get a free IVIG Play kit from Baxter Health. It is a really cute blue stuffed bear that comes with everything needed to pretend you are giving him IVIG. My dd and her brother love playing with it. I've posted the link before but I will find and PM you. Good Luck! Sam

Yes there are oil of oregano capsules. Solray I believe makes them. It is rare not to have Diptheria titers. Especially after 4 or more vaccines???? I am struggling with the same question about the H1N1 with my daughter because she was just diagnosed with PID. She has low pnuemeccocal titers but super high Diptheria titers. Can the PEX have removed them temporarily? I know with IVIG my daughter had completely different labs greater than 12 weeks after IVIG. They said that usually after 6 weeks the IVIG isn't in your system. But it took 19 weeks until her blood work went back to pre IVIG levels. (Low IGG again). uote name='mom md' date='Oct 2 2009, 10:30 PM' post='39854'] Thanks for eveyone's input. I am leaning toward not getting it but I need to think a little more. We did not have it available here now yet but if we do I want to get my son tested if he get's sick so I can have the knowledge of H1N1 and skip the vaccine. I also appreciate this tips on immune system builders. Currrently he just is an probiotics. Does oil of oregano test bad and can you get it in a capsule. Thanks, Clai